Almost 1 Month Old

Anna continues to make progress. Everyday she is making strides and growing. I still can not believe the progress that she has made in the last couple of weeks and that Anna will be celebrating her one month birthday tomorrow. We do not have another Doctor's appointment until mid October. I am anticipating going to the Doctor to continue to get the confirmation from medical professionals that she is going to be OK.

Sleep is still a challenge for us. We have made some progress and she has begun to actually sleep for a couple of hours at night between feedings. I did find that she seemed to like the pacifier that we got from the hospital. The only problem was that these particular pacifiers were not available in stores. I had to order them on-line. Luckily they were shipped quickly and we are all happy.

Big Sister Jill is also starting to adapt to having “baby” around. She still likes to grab at her and she would love to have Anna's bottle. The word “no” is said many times a day in our household.

David returned to work this week which leaves me at home with Anna. It is so quiet here during the day. On Tuesdays and Thursdays, Jill is also home with us. Things are not so quiet on those days. I have learned that I have to be much more organized on those days. I have to say that I have never given stay at home Moms enough credit. It really is a full-time job.

We have enjoyed our double stroller and have taken many walks. We have also had many visitors over the last week. We have made some short trips which have all resulted in a lot of screaming in the van. I am still very cautious about the places we go, I am terrified that she will develop a respiratory infection that could be dangerous for her.

Happy 3 Week Birthday Anna

Today Anna is 3 weeks old and we have been home for one week. The last week has been challenging but rewarding to know that our little girl is home with us.

Our biggest initial challenge upon arriving home was Big Sister Jill. She screamed for 4 days straight along with a lot a bitting and hitting. She has settled down and is starting to adjust to having another baby in the house. Lissie is excited to have her little sister at home.

Anna has had her own adjustments. Just like they told us in the hospital she is very difficult to soothe. She goes from sleeping soundly to screaming at the top of her lungs (and it is loud) in a second. There is no middle “wake-up” period. In addition, she seems to think that she lives in some time zone in Africa because she does not like to sleep at night. Unfortunately I do like to sleep at night, so this has been an adjustment for me. She eats fairly well (some days are better than others) and her respirations have slowed way down.

As far as the blog goes, I will try to give at least a weekly update on Anna's progress and more frequently if I am not changing a poopy diapers.

Just like any other baby

Just like any other baby, Anna's picture is now posted on the hospital's Web site. They actually took her picture the day she left (last Wednesday).
Here's the link: http://www.our365.com/NewbornPortraits/HospitalBabyDetail.aspx?birthid=79b5d01d-af6b-4e43-a0bd-695425fe4c96&babyid=185beb23-a997-48a9-a846-0a2c55d97226
And, for what it's worth, we're settling into life with two children under a year and a half pretty well. Everything's so normal (or at least normal for us) that we're really welcoming visitors to the home to see the kiddies. Just call ahead, please. But honestly, the way the youngest two act, we're not going to be going a whole lot of places right now.
-David

Thank You

I again want to thank everyone for their support and prayers. This was such and unexpected and emotional experience for our family.

We never anticipated that when Anna was delivered at 36 weeks, that she would have so many problems entering this world. The chances of a baby developing PPHN (Persistent Pulmary Hypertension of a Newborn) are every 1 in 1000 births and the mortality rate in severe PPHN are reported as high as 50%. I would hope that no one would ever have to see their child being kept alive by an ambu bag manually being squeezed by a respiratory therapist or to sit bedside while their child is on a ventilator and paralyzed for over 9 days. Being away from my other children and making sacrifices for our family was also a challenging situation. Watching this tiny life struggle to breath as I got to hold her for the first time was difficult as well as seeing her struggle with the discomfort as she was taken off all of the various medications that were supporting her life for so many days. As we continue to progress through the healing process of this horrible condition with Anna, it is still difficult at times to see her struggle with some of those little life challenges. Even though Anna is home now, she still has some ground to make-up as she continues to heal and recover.

I do not believe that I would have been able to make it through this experience so well if it was not for the many people who have shown Anna and our family their love and support. The prayers, the gifts, the cards, the kind words, helping manage our other children and the many offers for support all meant so much to us. I will forever be grateful for the so many wonderful people in our lives.

Jessica

Anna's 1st Outing

We went to see the Pediatrician this morning. Anna is doing well. She has gained 2 oz and now weighs in at 5lbs, 13 oz. Her vitals were all stable. Anna traveled well and was only upset when they disturbed her sleep at the doctor's office.

Anna also had her first shopping experience. We went to Sam's Club to pick-up some formula and other items. She did pretty well staying in her seat until she got hungry.

Jessica

It Was My Pleasure

These are words that I never expect to hear at a hospital. As I was thanking the Neonatlogist, Dr. Romero, for his compassionate and excellent care he provided for Anna while in the Special Care Nursery at St. Rita's Hospital, he stated to me “It was my pleasure to care for your child.” and then patted me on the back. Dr. Romero had spent a lot of time with Anna. He was called in the night she was born and spent almost the first 24 hours with her. He was also their when she was baptized and anointed with the oils. He had such a different approach to caring for my child and I am grateful for everything that he has done. I am not sure of his nationality but David and I guess somewhere from South America. He always called Anna “he” and referred to me as “Mama” and David and “Papa”. He would always tell me as I was sitting at Anna's side, “It's OK Mama, we are all working under the direction of him upstairs. He just guides us for what to do”. For many days (and they are still close to me all all times) I carried around her blanket and a set of rosary beads. He would always make sure that I had them with me.

I like my OB doctor and I like my family doctor, but I can not imagine them saying to me “It was my pleasure to deliver your baby” or “It was my pleasure to treat you for that sinus infection” I will forever be grateful that Dr. Romero provided such great care for Anna and was so humble about his role in saving this child's life.

Jessica

Our First Day Home

We have had a wonderful first day together. When Anna sleeps, Jessica sleeps. I do not think that I actually realized how physically and emotionally exhausting the last couple of weeks have been. Anna is taking very small feedings about ½ to 1 oz at a time, every 3 to 4 hours. Sometimes she will take a little more but she has to be really awake. She has her fussy moments, but for the most part she seems so much more relaxed than when she was in the hospital.

Big Sister Lissie was very excited to have her new sister at home, Big Sister Jill would like to bully her around. Even though Jill has only been a middle child for 2 weeks she has the part down quite well.

Anna will make her first outing on Friday. We have to return to Lima to visit the Pediatrician just to make sure things are going well. This is just the first of many appointments to come. Because of everything this little child has been through, we are now faced with many follow-up tests to assure that she is developing normal. Wherever they tell us to be, we will be there. As of right now she is showing no signs of developmental issues but she will be closely monitored as she continues to grow.

Jessica

Home at last!

I've never been happier to be driving the minivan than I was this afternoon. Shortly before 1 p.m., we pulled away from the hospital with Anna snugly snapped into her car seat, and we came home.

Home has been a difficult place for the last two weeks, as we tried to give our other two children a normal life while bouncing back and forth to the hospital. That empty bedroom constantly reminded us that Team Trinko was short one member, who spent her days and nights 30 miles away.

But now home is where our family is. There was no greater joy than seeing the garage door open or walk into the kitchen. It was a thrill to see the dog and cat sniff at her and then walk away with indifference toward her.

I've had some people ask me why I haven't been blogging more. After all, I'm supposedly the writer. But the reality is I wasn't sure what I could say until we had our baby home. It was too difficult to express that fear, that anxiousness, that worry.

Now that we have Anna home, Jessica and I keep looking at each other and wonder aloud, "What do we do now?"

But I know the answer. We live happily ever after.

David

Is Today Anna's Big Day

Is today the day? I hope. Anna had a good night and continues to do everything they expect her to do. David and I carpooled in this morning in hopes that this afternoon we will be bringing our little girl home. We have not yet seen the Doctor and we will need his blessing before we are able to go home.

Anna finally got her picture taken for the St. Rita's baby connection website this morning. It will not be on the St. Rita's site for a couple of days but she did really well and even showed a little of her attitude.

Jessica

They Have the Same Nose

Today was Lissie's big day. She finally got the courage to hold her baby sisters. Looking at them is was obvious that they both have my nose. It was so remarkable to see these two beautiful children together. Anna opened her eyes and Lissie was really excited that her sister looked at her. The rest of the evening she kept talking about how baby Anna likes her now and that she was no longer “in a box”. Lissie enjoyed her time with her baby sister and is excited about the possibility of her coming home.

Jessica

Our Family

It was nice to open the folder to see the picture that Lissie had drawn of our family. We have had some difficulty with Lissie accepting that she actually had a little sister. She did not grasp the concept that a baby could be that sick and that this baby would eventually be living in our home. Now, as Anna looks more and more like a little baby and more and more equipment is coming off, Lissie is finally excited about having “two babies” to be big sisters to.

Jessica

Going Home?

Anyone who has attempted to be discharged from a hospital knows how difficult it can be. Today we started that process in anticipation that Anna will be coming home on Wednesday. On the agenda for Anna today. A head ultrasound. Come to find out, on Day 1 they did a head ultrasound and found a minor bleed in her brain. This is common for babies who have gone through what Anna has. I talked to the neonatologist and he said that it is a grade 1 and it should resolve itself. Just to make sure they completed a second ultrasound of her head. It was kind of neat to watch because they did it using only the soft spot on her head. Anna will also have a hearing screening. At some point on Tuesday, Anna will also be evaluated by physical and occupational therapy. Finally, Anna will have a car seat test to see if she can tolerate sitting in her car seat for 1 ½ hours. If all goes well she should be discharged on Wednesday afternoon.

Anna was given specific instructions to avoid crowds and to make sure that everyone in the Trinko household has excellent hand washing skills. Also I was instructed to purchase lots of antibacterial hand sanitizer and to make sure that she is not exposed to anyone who has any respiratory infections. Anna will be eligible to receive a special vaccination for RSV to help prevent her from getting this respiratory infections. We will follow up with our regular pediatrician, who I am sure will keep a close eye on her.

Jessica

Day 13

Anna continues to make good progress. David and I drove into Lima this morning together and I spent the day at the hospital while David went to work. Anna went from eating 20 cc in the morning, to 30 cc in the afternoon and then she was put on feeding as much as she wants. As of this evening she was not receiving any IV fluids and taking her bottles very well. She is quite messy but she is usually very alert when she eats. The Nurse Practitioner today sated that she is not sure when she is going to be sent home but it would be “soon”. She told me “you better get ready”. She thought it would probably be late this week. Anna is still having rapid respirations and the Nurse Practitioner compared it to her lungs being bruised. Even though they are mostly healed, sometimes it takes a long time for the wound to completely heal. For the most part she breaths at about 60 respirations per minute but sometimes her respirations are over 100 per minute, especially when she gets excited. Today Anna weighed 5 lbs, 13 oz.

It was difficult for me but I did not go back to the hospital this evening to see Anna. Of course I had to call to see how she was doing. I had to stay home so that I could clean up her room and get some laundry caught up. I also had to get the car seat in the car and get her “going home” clothes ready. Her room is now all cleaned up and her bassinet is ready. Whenever they give us the word, we are ready to bring our little girl home.

Anna's Toys

When we visited Anna on Monday afternoon, she had lots of toys in her little area. When we arrived she was in a swing and she had toys on her little crib. It seems that Anna is giving the nurses quite a time. They say that “vent” babies are hard to calm and get relaxed. Since she was on the ventilator for so long she is even more difficult to calm. David and I enjoyed the extremes that they were going to avoid having to hold her constantly. I know that they have multiple babies to take care of. I try to be there as much as possible but sometimes we have to leave her in the care of the nurses.

Jessica

Bath Time

After getting the older girls back from their fun-filled day, we returned home. I immediately returned back to the hospital so that I could witness Anna's first bath. The wonderful nurse on night shift waited for me to return so that I could help with her bath and get her dressed for the very first time. Since Anna was is such distress right after birth, she never received a bath. They would try to wash her off but she had so much “stuff” hooked up to her that it made it difficult to get her clean. She was very oily and was in great need of a complete bath. Before the bath she was weighed and measured. Today she was 5 lbs 15 oz and 19 ½ inches long. She did not much enjoy the bath but enjoyed putting on her clothes. I was glad that I was able to see this moment. I returned back home by midnight. What a day full of progress for Anna!

Jessica

Treatment Plan Day 12

Anna still remains on an IV for her nutrition. Her breathing is being closely monitored. She is starting to take small feedings. Today we talked about the “H” word with the Nurse Practitioner. Home that is. I asked when we can expect her to be coming home and what it will take for little Anna to join her big sisters at home. She needs to be able to take at least 2 oz of formula every 2 – 4 hours, maintain a good body temperature and to be able to maintain a steady respiration rate and good oxygen level in her blood. The Nurse Practitioner stated that she thought if everything went perfect, she could be home as early as mid to late week. I was so excited to hear that news. I also know that I have some work to do at home before we bring her home. I have a feeling that when I bring her home, all I will want to do is hold her. We have some lost time to make-up for.

Jessica

Another magical moment

I can not believe all of the progress we have made in the last week. Last Saturday, things were still very unstable and today she appears like any other baby. Does she have periods of rapid breathing still? Yes. Is she only eating ½ oz per feeding? Yes. Are there cords still monitoring her vitals and and IV still in her foot? Yes But today she appeared as any other newborn would be just to look at in innocent little face. She is beautiful. Everything about her. I am so thankful to have this child to hold in my arms.

Jessica

Day 12

The older girls spent the day with Aunt Alice. On the agenda for them was to go to a football for Cousin Jacob and to go to the Hardin County Fair. David and I arrived at the Hospital around 11:00 am. It was big day for Anna, they were going to attempt have her breath completely on her own after 12 days of assistance. She did very well and now we can take her in and out of the crib without any sort of mask or tube on her head. It was cool and the nursing staff was very excited to share the news when we arrived.

Jessica

Hello World

Anna had a really good evening. I stayed to see her weighed and assessed at 9:00 PM after David took the older girls home. She really enjoyed the 60 seconds without the Cpap and Mom
enjoyed the opportunity to see her eyes open and her content. I could not help but grab my cell phone for a quick picture.

Jessica

Weight Watchers

Now that Anna is not on the ventilator she is weighed every day. Last week while on the ventilator and very swollen she topped off at a weight of 7 lbs, 9 oz. Today she is back closer to her birth weight. This evening she weighed 6 lbs, 2 oz. I sure wish that I could loose 17.2 % of my body weight in 2 days.

Jessica

Always keeping us our our toes

Anna is always keeping lift interesting for us. This afternoon she had and Echocardiogram (the second on in her short life) because her heart rate was elevated. The readings were sent to Columbus Children's Hospital and we waited all afternoon for the results. We finally god work back that it looked normal. The problem with the heart rate seems to be related to her temperature, which is up. They have had to turn down the temperature on the isolette a couple of times. Otherwise, she is doing well and making progress. No real changes in her care plan today. Things are status quo.

Jessica

Day 11

I visited Anna this morning at 7:30 AM. She was doing well. Still very irritable. They continue to have to give her small doses of Morphine because she does not calm easy. The Cpap is still on although the oxygen concentration has been lowered to 30. I talked to the nurse this afternoon and she stated that she was resting. We will go back and visit her later tonight. It has been very hard for me to not be at her side today but I know tha she is in good hands.

I am spending the day with Jill while David and Lissie went to see the Buckeye’s play in Columbus. Jill and I have had a lot of fun although how quickly you forget the energy level of a one year old.

Jessica

The Treatment Plan: Day 10

After speaking to the nursing staff this evening, they are planning on leaving the cpap machine on for a couple of days and continue to feed Anna through the tube. She needs to learn to breath at a normal respiration rate and to eat on a normal schedule before she will be able to come home If all goes well that could be as early as late next week. We are excited about this event occurring. We anticipated the removal of the ventilator and now we are monitoring progress so that she can come home. It does not even seem possible that we are talking about her coming home after last week on Friday when Anna was so critically ill. Anna truly is a miracle who has made such a successful recovery thanks to the many prayers and wonderful medical staff who have been caring for her.

Jessica

...and then 4 became 5

When we arrived at the hospital, we went to the nursery. After a brief delay while they finished shift change, we were allowed back to see Anna. They initially allowed David and Lissie to stay at the other end of the nursery. As things calmed down they set up 3 chairs for us and we were able to capture our first family photo. It was a really fun moment.

Jessica

Proud Big Sisters: Lisse and Jill

This afternoon I picked up the girls from day care. Jill seemed genuinely confused but quickly was comforted when I picked her up. Lisse ran with open arms and turned to her friends and said “ Just like she promised, My Mommy picked me up” The girls and I drove to Lima to pick up David from work. We received a gift card to Applebees from my co-workers at Putnam Acres, so we enjoyed a nice diner out. We went to Kohls so that I could pick up a new purse. I guess when you become a mother of 3, you officially need the “Mom” purse that holds everything. My old purse just did not cut it anymore, no more cute fashionable purses for me. We then made our way to the hospital for Lissie to see her new baby sister without the ventilator.

Jessica

Leaving the Hospital

I left the hospital this morning for a brief period to take David to work. I did it with out any problem because I figured that it was no longer of a period to be gone than the walk to my dorm room.

At around 1:30 PM this afternoon, Anna settled in well after her second feeding. My Mom and I walked to the front door and as I hugged my Mom and thanked her for stepping in and taking care of the older girls, I headed towards the car. As I left this afternoon, things were different. I was going home, the home that eventually Anna will call her own.

I walked down the long path towards the car. Although only a short walk, I felt like it took me 10 minutes to get there. It was really quiet and the farther away I got from the hospital, the more my heart began to ache, but then I listened. The birds were chirping and it sounded like Anna's cry, a car muffler was sounding and it reminded me of Anna's grumbling belly, 2 men running, passed me and I thought of Anna's beating heart. As I set in the car, the windshield wipers were on and they remembered me of Anna's independently breathing rhythmic respirations. I think for a moment that I should turn around and return to her side, then I look down at my wrist and see the band that has been on my arm since her birth. It matches hers. Even though I am pulling away from the hospital, I am not letting go of my little girl and am just starting my new journey of taking care of 3 little girls, all of whom I adore. Today is not the day I bring Anna home but today is the day that I feel assured that Baby Anna is in the hands of the nurse's at the NICU and she will be fine. Just a little more time to heal and my little Angel will be home with us.

Jessica

Our First Feeding

This morning Anna got to eat her meal. Well she did not exactly take a bottle but she was given 15 ml of food through the tube in her mouth. It was really cool. After her meal, she was laid on her belly and really settled down for a nice nap.

My Mom and I are sitting at Anna's bedside now. We were just commenting how she is acting and looking so much like a “normal baby”. It is awesome.

Jessica

Moving Day

The staff at the nursery has moved Anna across the room. She is now snuggled in an isolette that is kept at a toasty 90 degrees. She has her Cpap on and is resting comfortably. Her 02 stats remain stable. It has been a very good day for Baby Anna. She is getting some morphine to help her with the transition. After spending 9 days on so many medications, she is having some difficulty adjusting to the world. She is very irritable, but I love to hear her cry.

Thank you everyone for your supportive words and prayers. It truly has assisted me through this difficult time.

Jessica

A Special Treat

I walked over to the Special Care Nursery from my dorm room after an hour nap. When I got to the nursery the Nurse Practitioner actually answered the door. She looked at me and said “Do you want to hold” I immediately said “Oh you want me to wait here before going in, Is everything O.K.”. She smiled and crossed her arms across her chest and said “No, I mean hold the baby”. As tears welled up in my eyes I walked to Anna's side. I was rushed to the rocking chair and warm blanket placed in my arms and then Anna and I rocked. 10 minutes they said until we get her bed ready. She did well, of course the c-pap was on the entire time. 10 minutes quickly turned into 30 as they did her breathing treatment in my arms and even changed her diaper. It was another amazing moment that I look forward to many more off. She was easier to calm this time and opened her eyes and looked up at me. She has some difficulty breathing but they stated that she is doing well. It has been a really big day for her.

10 Steps Forward, 1 Step Back

It was magical to see this baby with out a respiratory and it still is, right now. It seems that little Anna is not taking to being off the vent as well as possible. This evening they changed her to a c-pap machine and are giving her some treatments to help with the swelling in the upper airway. This is similar to the c-pap machine that is used for sleep apnea. We new this was a possibility but holding her without any breathing equipment was so nice and now that is not a possibility. She will be closely watched overnight and hopefully the tube will not be reinserted. I have to have faith that this is the best plan for Anna. Every since removing the ventilator, she has been very uncomfortable. It is hard to fathom how she feels having to do all of the work on her own and just the pain and discomfort from having the ventilator in her throat. We made a really big step today with taking off the vent, it is just that we now need to pray that she can find the strength to take charge of her breathing and a settle into the world of being a normal baby.

Jessica

My Miracle Baby

Is it really September 4? I delivered a baby on August 27 but today September 4, I got to hold my baby. All I can say it that is was magical. I was shaking, I was crying, my heart was racing. I came out of the nursery and my Mom handed the phone to me to talk to my sister. I did not know what to say, I feel overwhelmed, I feel blessed. All I want to do is to go back in and hold her again.

Thank you for your so many prayers, miracles really do happen.

Jessica

Mom always liked you best

We thought we'd share this little ditty of smalltalk after they removed the ventilator from Anna. Apparently the nurse and Jessica alike are comediennes.

-David

A breath of fresh air

We finally saw what we've waited a week to see: Anna took a deep breath, all her own. And now Jessica gets to hold her baby girl.
They took Anna off the ventilator shortly before 2 p.m. today. It's a remarkably quick process to pull the hose out of her throat, really. And just like that, she was off and breathing.
Now the biggest problem seems to be that Anna's a little ball of fire. Now that she has the ability to make noise, she doesn't want to keep quiet. She's been crying for most of the hour since they took her off the ventilator.
And that's where Jessica's need to hold Anna came into play. After more than half an hour of not being able to keep Anna happy, the nurse practitioner suggested the age-old crying remedy of mom's embrace. So Jessica's now rocking Anna in the special needs nursery.
It's been an afternoon of joyful weepings here. Jessica and I were both teary-eyed when we saw Anna breathing for the first time. And she's very emotional now that she gets to hold her newborn daughter.
As for me, I'm just a proud papa who's thrilled his little miracle is doing better. She's using nose clips to bring in a little oxygen now, which is a good reminder that there's still a little while left before she's ready to come home. But she cleared a major hurdle today, and I'm feeling so blessed.
-David

Coming Home?

Anna will not be coming home right away. I think that I am confusing people by talking about the vent pressure and how excited we are to get that number down and to get the vent off. The vent is basically “life support”. Maybe when I was putting up prior entires I should have referred to the vent as a life supporting machine but it is hard to think that this 4 foot by 2 foot by 2 foot machine is supporting a life. Even though we are really close to taking away the “life support” and she is going to breath on her own, Anna still has some recovering to do at the hospital. At a minimum she will probably be here for a additional week after ventilator is taken off. She has never taken a bottle so she has to learn how to eat. Also they have to monitor to make sure that she does not take any steps backwards with her PPHN.

Morning Update Day 9

We made some major strides this . The “map” on the ventilator was reduced to from 12.5 to 11.5 then to 11. We are getting closer and closer. Anna's vitals remain stable and her blood gases are good. The nursery is a lot busier than it has been and Anna is no longer considered “one to one” as far as nursing staffing goes. Sometime the nurse might have one other baby. She does still have a respiratory therapist that hovers around her and is basically in the nursery just because of the ventilator.

We have not seen the Nurse Practitioner or Doctor yet today. Still waiting for them to come in with the plan for the day.

Jessica

All tucked in for the night

I stayed until Anna was turned at midnight and the turning down .5 of the vent. We are now at 13. Anna sometimes gets upset when turned so I try to be there during those times. I know that just laying your hand on her calms her down most of the time. They do have a “beanie” that they sometime have to lay over her when I am not there just to give her support. By now I know watch makes her “ticked off” and I have ways to make her relax. Her vitals continue to be strong, even with the pressure on the vent being turned down. I stayed until I know that she was resting peacefully.

I returned to my dorm room and as I pray for another day filled with progress, I just have to remember Father Alphonse's words: You have to have “Hope and Courage”

Jessica

The blanket

Today in Anna crib was a beautiful knitted blanket with the following prayer attached:

Lord Jesus Christ, Good Shepard of the Sheep, you gather the lambs in your arms and carry them in your bosom. We commend to your loving care this child.
Relieve them from pain, guard them from all danger, restore to them you gift of gladness and strength, and raise this child up to a life of service to you. Hear us, we pray to you dear Name's Sake. Amen

St. Michael's Catholic Ladies, Kalida Ohio

I have a doctor's appointment, why can't they make an appointment to remove the tube?

On Thursday afternoon I have my one week check-up with my doctor after having the c-section. I sometimes wonder why we can not make an appointment to have Anna's vent removed. So much of our lives revolves around scheduled events. In this situation, I know that it is not possible to know when she will be ready to be off the ventilator but in my mind it would make it so much easier.

They still have not made too many changes to Anna's vent settings today. This is difficult for me to understand but I know that I am not the Dr. This evening the nurse practitioner did state that at mid-night they would reduce by .5 and then another .5 at 6:00 AM. They call the number we are reducing the map. As of right now we are at 13.5 so hopefully they by morning she will be at 12.5. The Nurse Practitioner stated that Dr. Romero said that he wanted her at 10 before it was removed. She said that she has never seen them take it that low before removing the vent. Usually they only go that far down when it is a tiny baby. I told her that I was anxious to hold the baby and that I have seen that Anna is so much more vibrant today. She stated that she was working again on Friday night and that tube better be out by then! That was not a scheduled appointment but it definitely eased my mind that there is some hope to getting this tube out in the next 48 hours.

Jessica

Happy Birthday...

Jessica and I celebrated Anna's one-week birthday tonight. And, much to our surprise, a very alert and cheerful Anna was there for it.
Anna opened her eyes all the way for us while we counted down that magical time of 8:10 p.m. She looked around a lot. It certainly made me wonder what she thought she saw.
She has this amazing look of acceptance when she looks at the tube in her throat. She appears a tad annoyed with it, but she seems to accept it in the same way I accept my crooked fingers or that my second toe is longer than my big toe. It's just a fact of life for her.
All of her numbers looked great while I was there. It's really hard not to be optimistic when you see that she's breathing on her own at levels that could sustain her when she's awake. I want to believe she'll be breathing on her own on Thursday.
But I also completely and totally trust our doctors and nurses. If it's not the right time, we'll wait.
While it's mixing a birthday message with a wedding memory, as I've pondered our situation with Anna I keep coming back to a theme from our wedding a few years ago: "True love is worth waiting for." While I can't wait to hold Anna again and make sure she knows we love her, I'm also willing to wait until she's really ready and we can make her tube-less permanently.
David

Happy One Week Birthday Anna

Family Time

My Mom brought the girls up right after school today. I did some homework with Lissie in Mommy's new room. The girls were very excited to see Mommy today. And Mommy really needed a hug from her girls. It is just so difficult to entertain them for long periods of time at the hospital but we did our best. We made it through most of Lissie's homework for the week and Jill, who did not have an afternoon nap, was hard to please. Daddy brought McDonald's for the little ones and Chinese for the adults. By 7:00 PM it was time for the girls to take the trip back to Ottawa with my Mom. David stayed so that we could go visit the with Anna after 7:30. (We are not allowed to be in the nursery during shift change 7:00 to 7:30 or when some Doctors round)

Jessica

Real Progress

Well I figured out one great thing. I can bring my laptop with me to the nursery. I have spent most of the day with Anna at her side because I want to be here when she is attempting to wake up, but when she is resting I hate to poke at her. Now I can provide bedside updates. At 3:00 PM the sedation medication is gone which means we are down to one IV pole. No changes in the vent settings. I know that we are still a couple a days away from it being gone but I am getting so excited about holding baby Anna. I started charging the video camera today just to make sure that we are ready.

I getting ready for my Mom, Lissie and Jill to visit so I will have to journey back to my dorm room. I am going to get great exercise as I make many a trips back and forth to visit this beautiful baby who is showing signs of progress every minute.

Jessica

The Plan: Day 8

Well the progress to make changes this morning has been slow. I know that there are other babies in the nursery but I want the nurses, nurse practitioner and doctor to all focus on my baby. Sometimes it just seems like it takes forever for them to make order changes and determine what the plan for the baby will be. I am so ready for all of the tubes to be gone.

Here is the plan today: All of the medications used to control her blood pressure have been discontinued, her sedation medication was cut in half again, her catheter was removed, one of the setting on the vent was decreased by 1. Dr. Romero stated that he anticipates that the vent will be off in 24 to 48 hours. They will continue to decrease the settings on the ventilator. She has been tolerating all of the changes so far today so I am optimistic that she will do well the rest of the day.

The new challenge emotionally for me is that Anna is more awake. It is hard to see her try to cry with the tube in her mouth. You are supposed to pick up a crying baby but all I can do is lay my hand on her and let her know that I will be there for her. I know that I will be spending a lot more time with Anna at her bedside just because now that she is waking up I want her to know that I am there for her and reassure her in the little ways that I can right now.

Jessica

Evicted

I anticipated the news coming but was a little taken back this morning on how it was handled. I has just gotten back to the room after visiting Anna and was actually typing the previous blog entry, when a lady entered. She stated that I am the Director of the Unit and asked how things were going. I stated fine. She stated that they were very busy and that they would probably need the room. I told her that I understood and that we had anticipated with labor and delivery being so busy that they would need the space. I told her that I just wanted to be close to the baby while she was on the vent. She said well I am telling you that we need the room, do you have family to help you get your stuff so we can start cleaning. I asked about the hospitality rooms and she said I do not know you need to cal 9020. Then she said what is your last name I said Trinko. She stated “Oh your Husband wrote that article” and she tried to be be super friendly but I made it perfectly clear that I was not happy with her and was not willing now to befriend her after her initial treatment of me.
I was immediately flooded with anger at her approach. I never argued with her and it was like I had 5 minutes to get out. Well eventually I packed up my stuff, a volunteer helped me put it on a cart and we pushed it down to the lobby while I tried to work to get another place to stay. I felt like a homeless person pushing my stuff around the hospital on a cart with no place to go. David ran over from work to give me some cash so I could pay for the room. David and I settled into my new room. I have never had a dorm room before but I will get my experience tonight. No TV, a common bath and shower rooms. This is going to be fun. The walk over takes about 5 minutes which is so much better than the 45 minute trip I would have if I went home.

Jessica

Peek A Boo

Anna opened her eyes this morning for me. When I got to the nursery the Respiratory Therapist was so excited to show me the Anna had a little spunk and was opening her eyes. She was slightly opening her eyes it was great to see. I tried to take picture but she would only open one eye.
Anna is very stable this morning and things are really looking good for the ventilator to come off in the next couple of days. Then the next challenge is to see how she will do with out all of the support of the medications and ventilator. They said that it will probably be another week or so before she comes home after the vent is off. This will bring new challenges as I will probably not stay at the hospital but try to visit as often as possible. We will tackle that issue when it comes. Right now I am so anticipating the exhibiting of the vent.

Jessica

Power

It seems the the hospital is experiencing some power issues tonight. I have been told that this is some scheduled work that causes some shifts from regular to generator power. This means that for the most part everything is working but the TV in my room or the ice machine does not have any power. Also to charge the cell and computer, I had to find the red outlets. As far as the nursery, some of the light are a little different but everything else seems to be working fine. Just a little scary because power for the ventilator and other life supporting equipment are so important for Anna at this time.

The 3:00 AM update. She is resting well and vitals are stable. They continue to try to lower the oxygen concentration. I will try to get s little more rest before I go visit my baby girl.

Jessica

10 fingers and 10 toes

I remember when we first announced our pregnancy that people would always ask, I bet that you guys want a boy. David would always say, “if it has 10 fingers and 10 toes, we will be happy”. This common phrase struck me this morning as I was setting with Anna. She was moving quite a bit and I kept looking at her fingers and toes. They are perfect, all 20 of them. I reflected back to when we found out she was a girl, we were happy. We are still happy. Overjoyed by the birth of our baby just like any other parents would be. I think that this is hard for some people to grasp because they could not imagine being in our position. A week ago, I could not imagine being in our position. I am not sad. I am not mad. I am overjoyed to have baby and I will continue to do whatever it takes for this beautiful child. Sometimes it is hard as I walk back and forth to the nursery. I always get the pity looks. Thats the Mom with the baby on the vent who is “rooming in”. I do not expect people to feel sorry for me. Even though I can not hold her and only sometimes can I touch her, I have her here on this earth with us. It has been difficult emotionally at times but for the most part there are more good moments than bad. This experience happened for a reason and I do not ever expect to know why. I just keep my faith in God and let him guide me as we continue on this difficult adventure.

Jessica

Good Night Anna

It is difficult to leave the nursery at night. Usually during the day, I do not go more than 2 hours without seeing her. At night, even though I really do not sleep, I usually go 6 hours or so without seeing her.

She was still stable this evening. They were working on dropping her oxygen concentration. When she was first put on the vent is was at 100% for awhile. They made some initial adjustments to get her to a safe level and have been adjusting it down over the past few days. We have been at around 45% for a day or so. They are working to get it to 30% overnight. When I left this evening they were at 36% and she was tolerating it very well.

Day 7 showed a lot of progress and I am looking forward to more progress on Day 8.

Jessica

Sisters

(Anna holding a card from Lissie, it says Sisters, Lissie, Jill)

Lissie knows that she has 2 sisters. She wants to be part of Anna's life. But she is scared. What 7 year old would not be. It is so intimidating for her to go into the the special care nursery and visit her baby sister. She came to the hospital today energized to see Anna. We went to the gift shop and purchased Anna a blanket/stuffed animal and we put it in a gift bag. Lissie put a card in the bag. It was an “Its a Girl” card from the gift shop. She said this is from Jill and I and wrote on the card “Sisters Lissie Jill”. By the time we made it upstairs to the 5th floor, she changed her mind and said that she did not want to go and that I could take the gift. My Mom and I took the gift to Anna. It was a little silly that we were opening the gift for Anna but we put the blanket in the crib with her. I set the card in the crib to take a picture for Lissie to show her that Anna liked the gift and that she would be keeping it in the crib. The cool the thing was that Anna grabbed the card and held on. She did not want to let go, the nurses all came over and were amazed that she was grasping it with such strength. I guess Anna is ready to hang out with her sisters and wants to keep them close to her. It was a really cool and moving moment. I know how much I love and appreciate my sister and can not wait for Lissie, Jill and Anna to grow to be the friends that Kelli and I are today.

Jessica

A Good Afternoon

We had a pretty good afternoon. I am so scared as they discontinue some of the medications and prepare to wean her from the vent. Even though it is long time before it will be off, every time they take something away that has been supporting her life I get anxious that she will respond negatively. At one time we had over 10 medications being hung and infused at one time. The picture is of 2 of the infusion pumps that are left. She is on way more than 2 medications at this time but it is promising to actually see less “stuff” hanging. Her vitals remain stable and the Nurse Practitioner stated that the x-ray this afternoon was maybe a tiny bit better than this morning.

Jessica

The Doctor's Update Day 7

While resting in my room, Dr. Romero visited to provide an update on Anna's care plan. It was very similar to what the nurse practitioner had stated earlier. Some additional things that are going to occur: They are going to give her medication to reduce her swelling. The doctor stated that we are going to see her "shrink". He stated that they will continue to get blood gasses and make some changes to the pressure in the vent. He also stated that she is going to be more awake and that this is a good thing although she will be moving around quite a bit. This is a slow process and we are still at least a few days away from no vent. No vent means that we can hold our little girl, the moment that I have and continue to be longing for.

Jessica

Will you Marry Me?

David came by at lunch to visit. I had asked him yesterday to bring my wedding ring because my swelling has gone down substantially. He did not leave it this morning when he visited but this afternoon I asked if he had it. He promptly got down on one knee and asked me if I would stay married to him and placed the ring on my finger. It was nice to have a good laugh.

Today's Plan

I spent almost 3 hours at Anna's side this morning. She was quite active at times but her vitals remain stable. I did not plan on spending that amount of time but time just flew.

Anna and I were visited by the other priest from the Parish. He read the article this morning that was in the Lima News and wanted to co me and see our little miracle for himself. He said a beautiful prayer for Anna and blessed her.

She has not been seem by the Dr. yet today but the nurse practitioner did her assessment and I was there. Here are the details. Her hemoglobin was low so she will receive some blood product, they are going to reduce the medications that have been raising her blood pressure, the fentanyl will be decreased which is the drug that has been keeping her sedated. They are going to focus more on reducing the meds than changing the ventilator settings. We are still in the process of weaning from the the vent but we are a few days away from actually extabating the tube.

Day 7

Anna had a good night. A stable night. No major changes but her lab and test values continue to show she small progress.

I met with the Nurse Practitioner this morning and she stated she thought that her color looked better. Also she was a little more awake this morning even though they continue to give her medication to sedate her, she is moving her arms and legs a little. Now it is just a waiting game for the Dr to determine what the plan for the day will be. Hopefully he is in soon. I know that I have to prepare my self for many changes today and many ups and downs as they attempt ween her from the ventilator.

I attended the morning Communion service at the hospital. David got the girls to school/day care and is now on his way to the hospital. I am looking forward to a day hopefully filled with progress and good news.

Waking up

Usually like most people, early morning is not by best time. I like the snooze button on my alarm. Not these days. When I feel that it is morning and not night anymore, I am ready to go even though it is still only 4;45 AM. Overnight I checked on Anna about 1:30 AM. She was still resting comfortably and vitals were stable. Soon I will go visit again and we will start Day 7.

Showing off for Mommy

I have learned that on the even hours is when Anna is turned and assessed. I enjoy being there because then I get to see more of all of her parts and sometime I even get to help with keeping her arms from hitting the tube or moving a blanket for the nurse. I get to see her face which is covered up most of the time to block the light. When she is turned both the nurse and respiratory therapist do it. You would not think that it would take 2 people to turn such a little baby but they have to make sure that everything stays in place.

They have spent some efforts today to reduce the oxygen concentration to see how she can tolerate it. Earlier in the day when she was turned and jostled she would have some difficulties maintaining good oxygen concentrations and it was a little scary at times. When she was turned at 10:00 PM tonight she did very well. The nurse commented that she was "showing off for her Mommy" because I was not in the room when she was turned at 8:00. It felt good to see her do well.

The plan for the overnight is to just watch her vitals and let her rest. They are not planning to do any testing or make any changes unless necessary. Keep her comfortable and prepare her for possible changes tomorrow. At best we are looking at least a couple more days for her to be supported by the ventilator. It all depends on how she reacts to the changes. I try to not get too wrapped up in when the ventilator might come off so that I am not disappointed.

As for me it has been a roller coaster day emotionally. Each day reality sets in more and more and the emotions can become overwhelming. I try to stay focused on the positive and enjoy the times that I get to spend with Anna and also the visits from Lissie and Jill.

I realized late today that I did not really take too many pictures. I do not think that it was for any particular reason except that the camera happened to be in David's pocket. I will try to be better tomorrow.

Jessica

Column on our miracle

Here's a column appearing in Tuesday's editions of The Lima News. I know I haven't been contributing to this blog as much as my better half, and I hope to get better about it. But maybe this helps make up for it.
David

A miracle happened last week, right here in Lima. I witnessed this miracle, and yet for some reason I'm reluctant to share it.
Perhaps it's the fear of being labeled as a fanatic. It could be the worry of exposing one of the inner truths that makes me tick. But sometimes you see something so incredible that, no matter what other people think, you have to tell them about it.
I saw the hand of God touch my newborn daughter and change her life immediately.
My loving wife delivered Anna last Wednesday night, about three weeks earlier than we'd expected. Anna immediately began having respiratory problems, which we later learned were from a disease called Persistent Pulmonary Hypertension of the Newborn. It's a disease that hits about 3 percent of premature babies, where the child essentially wants to live as if she were still in the womb instead of adapting to the outside world.
She spent most of Thursday in a stable condition as the staff at the hospital figured out what was wrong. Then Friday came, and she slowly took a turn for the worse. She began rejecting help from the ventilator.
A priest from our church visited with my wife as I grabbed lunch with some visitors. During the time I was out of the room, things went downhill quickly for Anna, and most of the staff at the special care nursery seemed focused on keeping our little bundle of joy alive. A frantic call from my wife brought me back to the nursery.
Someone suggested baptizing Anna on the spot. We agreed, and our parish priest performed the baptism in that nursery. He then gave her another sacrament, the anointing of the sick.
I didn't know it at the time, but that must have been when the miracle happened. After two days of consistently bad news, things turned. Anna began to accept the help of the ventilator. Over the next several days, most of the news has been good.
She still needs some more little miracles before we'll bring her home. She's still very sick, the doctors tell us. But I carry the words of the priest with me like a life preserver: “You have to have hope and courage.” God brings me both of them, and I'm proud Anna and the rest of the family accept the Lord's help too.
The doctor handling Anna's case noticed the rosary beads my wife carries and confided in us that it truly helped Anna's cause. Hearing him say that reaffirmed my faith during a difficult time for our family.
I wasn't planning on writing about Anna's miracle in a column. I intended to only share this story with family and close friends. Then I heard a reading during Sunday Mass from Jeremiah: “I say to myself, I will not mention him, I will speak in his name no more. But then it becomes like fire burning in my heart, imprisoned in my bones; I grow weary holding it in, I cannot endure it.”
I have to tell people about this wondrous miracle. I can't hold it in anymore. It's too incredible not to share.

Another Family Meal

My Mom brought the older girls down to the hospital for a visit and then she is going to stay at our home so that they can have a somewhat normal routine. We had a pretty good visit. Lissie and Jill seemed excited to go home. David took them home after dinner so that they could have some time together. My Mom stayed at the hospital with me and we visited Anna. It gets harder and harder to sit for long periods of time in the nursery. I try to go for short periods so I do not get obsessed about the numbers and where they are. We are rstill stable this evening and looking forward to hopefully more positive changes tomorrow.

A Hot Lunch

We were very fortunate to have Davids sister Lynn bring us a hot lunch today. She delivered room service for David and I and we enjoyed some delicious chicken Alfredo and bread. It was so nice to have something that was hot to eat for a change.

Anna is still stable this afternoon. A little increase in the swelling which they expect with her being on the ventilator for so long. They said the the oscillation from the vent which is giving her 600 breaths for minutes pushes the fluid to her extremities. No real changes in the vent support. They are making small adjustment in the amount of oxygen concentration.

The Plan

I was in the nursery this morning when the Nurse Practitioner did her daily rounds. The plan for the day is to keep her stable and continue to monitor the levels. She did state that there would not be an official attempt to wiene her from the vent in the next 24 hours.

Anna did give me a minor scare. Every time that they turn her she usually has to be suctioned because some phlegm usually breaks loose. After they turned her at 10:00 they suctioned her twice and she still was very uncomfortable. Her oxygen levels dropped slightly. There was a 5 minute period where we all just kind of watched the monitor. She promptly returned to her normal level and relaxed. It was not even that critical of a moment compared to what we went through on Friday but for me it was scary because the last few days everything has been so positive it was hard to see any negative change.

Jessica

Happy Labor Day!

I woke about 5:30 AM this morning and made the walk to the nursery. Little Anna had a really good night. Blood gas levels continue to be good and a couple of minor changes were made overnight to decrease the vent support. She was very relaxed when I arrived. At about 6:00 AM they had to turn her and she really appeared to awaken quite a bit. She was really grasping my finger and kicking her feet. She does have a continuous IV of pain medication to try to keep her comfortable but as she wakes up they said she is going to move more and more. They can not risk having her disturb the breathing tube so they did have to give her a dose of the medication that relaxes her. I am feeling well this morning and optimistic about the day that is to come and what additional improvement my baby girl can achieve.

Jessica

Sleep

It is about 2:30 AM. The update. Anna continues to be stable and the 2:00 AM tests looked good and another level on the ventilator has been decreased. Still a long, long way to go but we are making progress. Also they have not had to use much of the sedation medication in the last day. I am proud of Anna and her will to fight through this horrible condition.

Sleep. I know that I need it. I know that it is important in the recovery from my c-section. For me it is impossible. A couple of hours at a time at best. I had previously been taking sleeping pills at night while a patient in the hospital which seemed to "knock me out". None tonight and I am trying to rest but it is just so hard not to be with the baby. I will try to watch some of the stimulating late night TV that is available and patiently wait for the next update.