Final Days in the Hospital

Saturday 10/18/14:

My mom took Evan for the day so Jake was able to make it to the hospital to see our new digs! It was like a breath of fresh air having him around again...I cannot tell you how many times I sat down to hold Titus and would get thirsty and see my water bottle all the way across the room!

As I mentioned, Titus ended up pulling his NG tube out Friday night and during the rounds Saturday morning the doctors decided they would not replace it right away and allowed me to feed him ad lib. Hallelujah! We have 2 weight checks per day, 8am and 4 pm. So long as he is gaining then we can go home! Easy enough right??

Apparently, even though they have been all over how and how much he is being fed, they don't care to monitor how his weight is checked and the accuracy of those checks. This was seriously disappointing as there were multiple opportunities for error and we could have probably been in a world of trouble had I not voiced my concerns...I mean they are monitoring grams at this point!

My observations:

1. A different nurse is weighing him each time, sometimes even with a different scale. Certainly there is a difference from scale to scale.

2. Some nurses were weighing with his blood pressure cuff on or his lines hanging on the scale, some were holding them up.

3. Some would weigh him with a clean diaper on, zeroing out the scale, and some without. Certainly the weight from diaper to diaper changes a bit.

4. Some told me not to feed before a weight check and others never mentioned it.

5. There were lines and other monitors permanently removed from him each day so its not unrealistic that a gain could be offset by the removal of those.

I wonder how many babies have been sent home on fortified formula because weight gain was not supported under these conditions....BLOWS MY MIND! Luckily, Ty has managed to gain at every weigh in so far despite the differences...

As of Saturday Ty only has the PICC line, heart rate monitors, and a pulse Ox on his hand. We are almost there!

How can I help?

We have been blessed and overwhelmed by the amount of support from family and friends over the last few weeks, along with inquiries on how to help. Here are two ways:

1. An amazing family from our church group set up a meal train for us so that we can manage and organize drop offs all in one place! Here is the link for more info/sign up if interested in helping us with a meal:https://mealtrain.com/d4qel

2. We have been rather fortunate to have family members in St Louis that minimized our relocation expenses by providing housing and also care for Evan during our hospital stay. However, many of the families we met on our journey do not have that same fortune and we would like to help them in their time of need by providing children's books, meals, cards of encouragement, etc. We are allocating some of our own funds and setting up an account where donations will be accepted if you feel a calling to help. I will post this link separately once the account is live.

Please also keep praying for those families we met in the CICU, specifically for an extraordinary boy name Jackson and a sweet girl named Maddie. Both have touched our hearts and we continue to pray for them and their families daily.    

Doc, what part of breast feeding do you not understand?

When moved to step down, I was given permission to feed him as often as he was interested (YAY!) However they were still bolusing him breast milk through the NG tube every 3 hours and we were almost to full feed amounts...so when in the world would he be interested in nursing if he was full all the time?? And even if he did get hungry before the next bolus feed and I let him feed at breast, how would they adjust the bolus amount in order to avoid overfeeding him and causing tummy issues/reflux/vomiting? This "schedule" is not how a newborn feeds naturally and we certainly were not going to be feeding him by NG tube at home so shouldn't we be feeding him how we plan to at home?

This continued to be an uphill battle for two reasons...

1) The docs just wanted numbers and to measure exactly how much he was getting, which is not possible when breastfeeding. We initially tried to bottle feed him my milk, solely to get the docs their numbers and get us home sooner, but after trying twice Titus was clearly not interested and we weren't going to force it and then try to transition him to breast later.

2) Docs didn't want to remove the NG tube in case breastfeeding didn't work out and they would have to replace it. They also didn't want to stop bolus feeds because that was their way of knowing he was getting "enough".

This was so frustrating. As a mother who had successfully breastfed our first son for 13 months, it was clear to me that Titus had the tools and desire to feed if given the chance. He proved it in the NICU and also in CICU. He just wasn't being given a chance to show his full interest! (To be clear, I fully understand the doctors concerns, its a very real and legitimate issue with many heart babies...but sadly the system sets them up for that despite the few that could really thrive on breastmilk alone.) I knew that it was a possibility that breastfeeding could be challenging with Ty's condition, however my motherly instincts were telling me this was not the case and I was NOT about to give up!

Ultimately had Ty and I not taken things into our own hands and literally fought for breastfeeding it would have led to coming home with an NG tube. But Ty, by his own hands and with a small bit of assistance, decided that night that the NG tube was coming out...and from then on, he was eating like a champ!!!

Titus's first and last bottle....

Sleeping in peace with a full belly after pulling the NG tube out...

We're moving on up! I mean, down...

Friday 10/17/14:

We got news that we will be heading to step down today...and in hospital time, that means we got notice about 30 minutes before we were expected to move! Jake was taking care of Evan all day so that meant I had to quickly pack everything up and move it all by myself. Jake was not thrilled with this news since he wasn't there to help but we managed just fine and were thankful to be one step closer to going home.

In step down, your nurse pretty much leaves you be unless you need something, which is nice. Less interruptions, less noise, less tests, etc. I also no longer had to ask to hold Titus and was responsible for all his care, including baths, diaper changes, giving medications, etc. which is wonderful!

I knew the step down unit was our last stop before we would be discharged so I was initially thrilled to be there...however that enthusiasm quickly faded as we were placed in a smaller room than we had in the CICU and it was shared with another family. That experience was interesting to say the least. The patient was a teenage boy who insisted on watching horrible day time TV shows and I was trying to breastfeed which made for some awkward moments. Luckily, they were discharged a few hours later and no one else was scheduled to replace them, so Ty and I ended up getting the room to ourselves.

Big news of the day: His arterial line was removed and they completed his post surgery ECHO and EKG. At this point, all they are monitoring is his weight to make sure he is gaining before we can go home. And this is where, to my surprise, things started to get really challenging....

Ty and Papa

Its so nice to see him without any tape or accessories on his face!

Changing his incision and chest tube dressings....such a strong boy!

Progress!

Thursday 10/16/14

Cannula completely came off yesterday evening. After only a few hours they realized our little guy didn't need it and was doing well on room air alone!

The NG tube sadly was put back in but this was a compromise in order to be able to begin feeding fully today. The nurses were really pushing for oral feeds to start yesterday however the doctors weren't in agreement and insisted that Titus be completely off the Dex before oral feeds start in order to avoid the risk of aspiration. An incident like that could set us back quite a bit so I was okay with being more conservative with this especially since we had so much progress yesterday.

Today, Titus is now weaned completely off milrinone, epinephrine, and dexmedetomidine. They will keep the lines in for now, delivering an extremely low dose of heparin, along with some fluids, just in case he needs to go back on any meds. Titus has not yet needed any morphine for pain management. Its hard to believe that two days post open heart surgery all he is on is two small doses of Tylenol! What a champ!!

So here is what is left:

1. Pulse Oximeter: To monitor Oxygen levels in his tissues.

2. PICC line: the central access for all meds, antibiotics, TPN to be delivered.

3. Arterial Line: Monitors his blood pressure 

4. Heparin: Blood thinner that prevents clotting around the artificial tube they inserted in his heart. This will be weaned off before we go home and will be replaced with a daily aspirin.

5. Heart monitor leads: Monitors the heart rate.

6. Lasix: A more mild diuretic that he will go home on to prevent excess fluid build up.

7. NG tube: Should come out once feeds are established...I am still getting the run around on when that will be but for now they want to continue increasing the amount of breast milk he is receiving by 4mL every three hours until the goal feed of 70mL is reached.

The goal now is to continue monitoring overnight and possibly move to step down tomorrow (Friday)! Praise the Lord!

Our awesome nurse Nikki. She was aggressive in removing his meds and weaning him off oxygen (which turned out he didn't need at all!). She really advocated for us at a very critical time in his recovery and we couldn't thank her enough!

NG tube and pulse Ox are the only things left on his sweet face!

Daily check with the Pediatric Cardiologist.

Evan meeting his little brother for the first time!

Neighbors and friends

Since being here at Children's we've come in contact with many other parents and kiddos, each having their own unique and amazing story. We pray everyday for these children and their parents and we would ask that anyone reading this do the same. A couple things I know...God absolutely hears and answers prayer and performs miracles everyday.

- Jackson was in the room across from us when Titus was admitted to the NICU and I'll never forget his precious eyes staring back at me through his room window while I was anxiously waiting outside of Titus's room for the staff to get him settled in. The following day I got the pleasure of meeting Jackson's father and got the low down on his unbelievable story (see their blog: http://ourpaljackson.blogspot.com/). Mason and Rachel are Jackson's parents and they have been a wonderful source of encouragement and strength for us...all while handling a very challenging situation of their own. We are thankful for this family and honored to witness Jackson's story.

Please pray for Jackson, Rachel and Mason. The little ones in this hospital are fighters and Jackson is probably one of the toughest of all.

- Jake

Oh, give thanks to the LORD, for He is good!

I am caught up and actually posting on the day of, yay!! And today is a BRAND NEW day!

I got to the hospital at 7:30 this morning and met our new nurse who had Titus swaddled and comfy as a bug! It was immediate relief even though his breathing tube was still in...

Within just a few minutes of arriving we got news that they were going to stop the Fentanyl drip completely now AND remove the breathing tube!! PRAISE!!! He seems to have his pain managed by a combination of Dex and bolused Tylenol and if it seems that he is in any pain they will bolus morphine as needed.

Then a few minutes later, we got more good news! They will be taking the RA line, catheter, and both chest tubes out as well! HALLELUJAH!!!

Could they top this?? Oh yes, yes they could!! I get to hold my little man and he can get some milk in his belly if all his labs come back good this afternoon! Oh how empty my arms have felt the last couple days...so happy inside!

So the current list of what is still connected:

1. Milrinone: A vasodilator that assists with the contracting of the heart and prevents overworking the heart muscle by creating less resistance in the arteries (lowers BP).

2. Epinephrine: Assists with the squeeze of the heart muscle while he is recovering.

3. Dexmedetomidine: His new med for light sedation. This low dose keeps him calm so he doesnt pull any lines out, but it does not manage pain like Fentanyl so they have put him on tylenol for the moment and if it appears that he is in any pain, they will bolus morphine as needed. 

4. PICC line: the central access for all meds, antibiotics, TPN to be delivered.

5. Heparin: Blood thinner that prevents clotting around the artificial tube they inserted in his heart. This will be weaned off before we go home and will be replaced with a daily aspirin.

6. Ancef: An antibiotic given for 48 hours post surgery to prevent infection. 

7. Pepsid: To protect his gut while he is not getting feeds. This will continue until he is fully fed at breast. 

8. Heart monitor leads: Monitors the heart rate.

9. Tylenol: This is his pain management, much preferred to morphine.  We hope he continues to prove he is a strong little man and does not end up needing any morphine at all!

10. Bumex: Diuretic to get excess fluid out of his system.

11. Pulse Oximeter: Measures % delivery of oxygen to his tissues.

The team has been stopping by periodically throughout the day and has mentioned that they are going to start weaning the Epinephrine, Heparin, and Dex overnight. He is no longer going to get Ancef since it has been 48 hours since surgery and they are switching the diuretic from Bumex to Lasix. Once he is off all the meds and on his own, we can remove the arterial line from his leg and the PICC line from his chest!

Each line and medicine that is taken off means we are one step closer to being moved to the step down unit and then GOING HOME!

Thank the Lord for such a BIG and GLORIOUS day for Titus !!!

Last photo before removal of all the accessories...

Our nurse board in our room...we change the verse daily. 

Back in my arms, resting of course! 

This too shall pass.....

Tuesday 10/14/14:

Today was extremely difficult for all of us, and especially trying for me as a mother. Our whole situation is taking a toll on all of us, Evan has been acting out and is clearly a bit upset with us each time we visit...I completely understand why and hope he knows how much we miss him. We completely uprooted ourselves to St Louis and he went from spending every day since birth with me, to spending nearly 11 straight days without me.  I hope once we get home and back into our routine that he makes the transition easily. He handled several transitions well before; from breast to goats milk, from crib to full size bed, from home to preschool twice a week, and he seems to love babies lately. We are planning on spending more time with him each day as we hopefully get closer to heading home...hopefully that helps!

Even more difficult, here hospital side, they tried to wean Titus off the Fentanyl drip so they can get him breathing on his own. Fentanyl is a narcotic and suppresses the respiratory drive, leaving him unable to breathe on his own. We need to wean him off the drip in order to get him breathing on his own and get that blasted breathing tube out! However, the Fentanyl is also his pain medication, so in order to continue to manage his pain without the Fentanyl, they need to start him on Dexmedetomidine. Finding the perfect balance between these is a challenge as each baby responds different...they want to have him able to move and breathe on his own but be calm enough to not cause harm or allow too much movement that would hinder healing. In our case, Titus woke up too much the first time they weaned and he freaked out, thrashing his arms and arching his chest, his respiratory rate and heart rate escalated. They immediately had to sedate him again and tweak the measurements.

This scenario repeated itself several times through out the day which was SO SO SO hard to witness. Each time he would come to and open those sweet eyes, there was a bit of excitement and my heart melted for him...but shortly after, he would turn bright red and squint his eyes in a silent cry since the breathing tube prevents any noise from escaping. I tried to soothe him at his bedside, rubbing his head and patting his chest but it was so overwhelming. It was awful to stomach...my innocent Titus lying there helpless, in pain, unable to be soothed or comforted, while they calmly try to figure this out. I grabbed our bible and read outloud, prayed and prayed, cried and cried several times through the day....A day I was so looking forward to in terms of celebrating the beginning of his recovery had turned into one of the hardest days yet. I was drained emotionally, physically, spiritually....I got angry with God and my heart was hurting.

 Jake could clearly see my struggle and graciously offered to stay with him and comfort him while I showered and got some rest with Evan that night. It was so hard to walk away, but it just what I needed...Jake has been my rock and I cannot imagine having done this without him...he stays strong and reminds me to keep my eye on the prize--getting everyone back home!

Psalm 119:114-115

You are my refuge and my shield; I have put my hope in your word. 

A little bit of this, a little bit of that....

Monday 10/13/2014:

Once we were allowed back in Titus's room, the doctors and nurses went over every line and medicine that he was hooked to....

1. Milrinone: A vasodilator that assists with the contracting of the heart and prevents overworking the heart muscle by creating less resistance in the arteries.

2. Epinephrine: Assists with the squeeze of the heart muscle while he is recovering.

3. Foley Catheter: Allows his team to monitor his urine output as he will have excess fluid to lose in the next couple days. His output will actually determine when they pull him off the breathing tube as they do not want excess fluid and swelling to close his trachea when the tube is removed.

4. Fentanyl: Sedative pain medicine so that he does not feel anything and cannot move.

5. PICC line: the central access for all meds, antibiotics, TPN to be delivered.

6. Heparin: Blood thinner that prevents clotting around the artificial tube they inserted in his heart. This will be weaned off before we go home and will be replaced with a daily aspirin.

7. UAC Line: This is his umbilical line that monitors his blood pressure. It has been in for 8 days now so they will likely remove it tomorrow.

8. Ancef: An antibiotic to prevent infection.

9. Pepsid: To protect his gut while he is not getting feeds.

10. Two chest tubes: For draining excess fluid around the heart. The goal is to have these removed within a couple days.

11. Breathing tube: Self explanatory. This is how he is breathing for the first 24-48 hours.

12. NG Tube: He is not going to get feeds for at least 48 hours post surgery so this is placed for the time being to allow any extra air to escape his gut. Eventually, he may get feeds through the tube, but it depends on when they remove the breathing tube. The goal is to get him to breast 6 hours after the tube is out but some babies have trouble with feeding after the breathing tube is removed since it can irritate the throat and cause swelling. We have high hopes for him getting back on breast and never looking back.

13. RA line: A line that goes directly to his heart to monitor the pressure in his right atrium.

14. Heart monitor leads: Monitors the heart rate.

The goal over the next 24 hours is to keep him comfy and sedated to allow recovery. He will be closely monitored and then reassessed several times a day to determine what adjustments can be made and what can be removed....every line that comes off is one step closer to home!!!

Time for Surgery!

Monday 10/13/14

We got news late last night that we will be moved to second case of the day so surgery will be moved to later in the morning depending on how long the first case takes. It was a bit startling, but we figured the upside is that it will give us more time to squeeze him! It also allowed us to get to know our nurse for the day and she brought great peace to our morning when we heard her singing to the songs we had playing on the christian radio station in our room. God was with all of us that morning.

4:00 AM Titus had his last blood draws for pre-surgery labs and also got his pre-surgery bath with chloro-hexadine.

8:00 AM They surprised us with news that the surgeon was requesting Ty have a PICC line placed before the surgery. This will allow a centrally located intravenous access for a long period of time to deliver TPN, meds, antibiotics, etc. It took over an hour for them to place it which sadly ate up quite a bit of our snuggle time BUT as soon as they were done I scooped Titus up and held him for about an hour or so until the transport team arrived and we walked with him to the OR.

11:10 AM We walked Titus to the double doors, said a prayer over him, and then entered our private waiting room to wait for hourly updates.

12:07 PM Got a call from the OR nurse that Ty was fully prepped and surgery would begin in a few minutes. More prayers....

1:00 PM Fire alarms went off on our floor. Talk about freaking a momma out!! There was a small fire somewhere else on our floor and it was put out quickly.

2:37 PM Got the call that Titus is off of the bypass machine and they are double checking for bleeding before sewing his chest up.(!) This is great news as some babies cannot have their chest sewn up for a couple days due to swelling...he apparently has tolerated everything very well.

3:10 PM He is sewn up and now headed back to the CICU to get settled in. HALLELUJAH! Praise the Lord!

3:32 The surgeon came in and told us that the surgery went very well. He was actually very casual about it, talking as if he had just went in and replaced an exhaust pipe on a car or something! He mentioned that Titus went on bypass just fine, they took a look at the anatomy of the heart and as the CT scan showed there were no surprises. They cut his PDA out and placed the gore-tex tube between his aorta and pulmonary arteries. They also took a good look at the pulmonary arteries while in there as well and determined that right artery was large enough but the left one needed to be widened for adequate blood flow to his lungs. So they patched it by cutting it open and then sealing it with a donated human artery that will allow growth over time.We sat there hearing the news and waited for the BUT...but it never came! We could not have asked for a smoother surgery and are very grateful for the team taking care of Titus.

4:00 We headed back to the CICU waiting room and anxiously waited for the staff to give us the okay to see our little man. We actually were lucky enough to sneak a peek at him as they were bringing him back down the hall...just perfect timing!

5:37 Ty was fully set up in his room and we were finally allowed to go in...

This was actually where I thought tears, emotions, sadness, confusion, etc. would overcome me as a mom...however I was pleasantly surprised to not shed a single tear...While pregnant I spent a lot of time on blogs and FB pages of other heart babies to educate myself as well as desensitize myself to what we would be facing. I am very glad that I did because it was not easy to see him after surgery, but honestly, we had prepared ourselves for much worse so this was a relief! We actually smiled and rejoiced at how good he looked considering what he just endured. God has an amazing way of comforting us in times when peace is far from being found on our own....

WARNING: If you are sensitive, you may want to skip the photos below....

Lots of monitoring....

Swelling from surgery and excess fluids...very normal and we expected worse.

Fully sedated and paralyzed so he doesn't rip off any lines.

They will keep him fully sedated and closely monitored overnight and if he is stable, then they will see how he tolerates a couple adjustments....prayers for a quick and uneventful recovery!

Prep and Prayer

Saturday 10/11 & Sunday 10/12:

We snuggled Titus as much as possible and prayed that he stay strong for surgery Monday. We had a couple visitors; Jake's sister, dad, mom, my mom, and a good friend from our church, along with his daughter. It was so nice to have everyone's support and well wishes!

We were surprised to get moved out of NICU and up to CICU on Sunday morning. We were excited to get there but it was also a bit stressful since we had gotten used to the NICU and the staff over the last several days; and they were used to us by now too! Even though it was another adjustment period for us, it was great that the staff got the opportunity to know Titus before his surgery...they often get babies last minute and then see them at their worst. Additionally, the CICU nursing staff here is top notch...I feel way more comfortable leaving for a bit to shower, eat, etc.

The nurses explained what we can expect tomorrow; he will have labs first thing in the morning and will receive two chloro-hexadine baths before surgery. They will let us snuggle one last time and then he will head to get prepped for the OR. Once we get to the double doors, we say our goodbyes and then will see him 5-6 hours later so long as everything goes well. Other than prayer, I am not sure how a parent prepares themselves for this time...

We received an abundance of calls and emails today, We cannot express how meaningful all the prayers are to us...to those who have prayed for us and also with us over the phone, we are forever grateful. We were able to catch up on some sleep thanks to the peace those prayers delivered us.... We are still WAY short in the sleep department, only leaving Ty's room for a handful of hours each day total but we also know that between a newborn and toddler, we are going to be dead tired in the coming weeks once we return home anyway!

Tomorrow is the big day Titus, get your rest!!!

Can you guys turn these machines off? 

I sure am going to miss his warm body snuggles for a few days....

Surgery?! Tomorrow?! 

Boring days in the NICU are GREAT days!

Thursday 10/9:

We are extremely thankful for another calm and uneventful day. Titus is going strong without the cannula and since he is stable and his SATS and labs are coming back great, they are even letting us begin to nuzzle twice a day after I pump. Even though I would still prefer to be fully breastfeeding, at least this way he is able to practice feeding. The more we are able to nuzzle, the more skin to skin time, the more breast milk I will make, the more he will be comforted and the more ingrained breastfeeding will be when he is ready. He of course gets a little bit of milk every time we nuzzle since it is nearly impossible to empty the breast completely but its headed the right direction and I am more than happy that the staff is trusting me enough to grant us that time.

We also heard that it is possible we could be headed to surgery tomorrow...we are waiting anxiously for the call.

Praise the Lord for a peaceful day of snuggling with our big guy...


Friday 10/10:

We got word that will not be able to squeeze him in for surgery before the weekend BUT he did get the first case slot on Monday morning at 7:30 am. Hallelujah! While it seems strange to celebrate surgery being scheduled, we also know that it is a necessary step to get Titus home and to the next step of actually fixing his heart.

We met with the surgeon that will perform the shunt procedure, Dr. Manning, and went over the CT scan/3D images of his heart in more detail, along with the plan for Monday morning. He spent about an hour with us explaining the anatomy of his heart vs a normal heart and then went into any worries that he has based on all the info they have pre-surgery as well as the risks.

He mentioned:

1: They plan on doing a central shunt (still a BT shunt but placed a bit different based on his unique anatomy). The shunt is an artificial tube that will attach his aorta to his pulmonary artery and allow blood flow to his lungs.

2. His CT scan revealed what they think is a bit of narrowing in his pulmonary arteries so he will possibly widen and patch those based on how they look once they have him open. The concern is that the narrowing may cause insufficient blood flow to the lungs once the shunt is placed. They do not want to send us home and risk needing us back for surgery just to widen those so they are going to make sure they are sufficient size while he is open.

We signed the consent form allowing them to move forward and do any procedures deemed necessary at the time. It was quite the form but we were happy to be moving in the right direction. We plan on cuddling all weekend because once he is admitted to surgery we will not be able to hold him for several days.

The set up of Titus in the NICU...this is minimal believe it or not!

Sleepy sleepy sleepy....

A new day...

Wednesday 10/8:

We were able to get a few hours of rest and were looking forward to a new day....

Titus's labs overnight and in the morning continued to come back completely within acceptable ranges. They decided to space his blood draws out to every 8 hours instead of 4 now which is great news! They also have mentioned possibly taking him off the room air that is being delivered through the cannula on his face. He hates having it taped up to his nose and is constantly scratching and pulling on it...to be honest when it slipped off I never worried about putting it back in too much because nothing was changing.  They are going to start delivering nutrition through his IV today as well and also mentioned that if he remained stable, they would consider letting us nuzzle at breast again, which is GREAT! He has not forgot about the boob since he had it that first day of life and he is constantly rooting.

Titus's cardiology team also met today and went over all the tests and the new ECHO in order to get a game plan together. They sat us down and confirmed the  plan is still to place a shunt in his PDA to keep it open and continue delivery of blood to his lungs but they will also be patching a few pulmonary branches in order to ensure adequate blood flow to his lungs. We will be meeting with the surgeon before the surgery and they are hoping to get us scheduled ASAP since Ty is plenty healthy and ready! Unfortunately, CICU is currently at full capacity so we remain on standby until a bed opens.

I also got to see Evan for the first time since leaving for the hospital on Sunday evening. It was a short visit with many joyful tears on my end but it was so refreshing. I miss him SO SO much!

Overall, today was an awesome day. It was so nice to have less people poking and prodding as well as no beeping or alarms going off! We are giving thanks to the Lord for such a positive day and we are hopeful to get into surgery before the weekend, for the cannula to come off, and for things to continue to be as stable and quiet around here...

Ups and Downs

Tuesday 10/7:

This was the most challenging of days. Not only did Titus undergo a load of tests yesterday making for a rather stressful first day of life but there are a LOT of people assessing and monitoring him. Machines are constantly beeping and people are in and out, making noise each time they enter. Some of the doctors and nurses are mindful and will be quiet when talking or let him continue resting if he is in a peaceful sleep. BUT others are not as courteous and will talk loudly without second thought or uncover him and put a cold stethoscope on his chest. As parents we tried our best to walk the fine line of letting them do their job while also making sure Titus has the most calm and nurturing environment under these circumstances but it is so hard!

They also took away breastfeeding later in the day...making for one sad mommy. They said he was too vigorous a feeder (!) and they were concerned about his high Ox SATS and his respiratory rate. They continued monitoring and then became very concerned about a high level of lactate that was also detected. They immediately wanted to put him on an IV medication and in a plastic box to regulate his Ox/Nitrogen intake...this would ultimately open up his blood vessels and allow more blood flow to his tissues. The concern was that if they continued to allow milk into his gut, blood would be diverted from his other tissues and would be focused on the gut to break down food instead. This would result in a very serious condition called Gastroenterocolitis, or inflammation of the gut. We were devastated when we heard the plan since that meant that we could no longer feed or even hold him BUT something just didn't seem right to us about immediately putting him on the gas and medicine on the second day of life when his little body is still adjusting to life outside the womb. We asked about other options and for a second opinion and thank the Lord that we did,....they were able to repeat his blood work and when it came back his lactate levels had dropped. We agreed to another lab a few hours later and they were even lower! Doctors concluded on day 3 that his high SATs and respiratory rate are probably more of a function of his large size as opposed to a problem related to him nursing.

At the end of the day we were exhausted....emotions had ran high and we were going on only 2-3 hours of sleep since Saturday evening. We called a good friend from church to join us in prayer and lift our spirits to make it through the rest of the week. It was unreal how much it helped us to be able to get some rest...we are so thankful for our friends and family that we can reach out to in these times.

1st days

Sunday Evening 10/5:

Titus managed to get placed in his own NICU room instead of the community room. I was hoping for this as it is more quiet and private! We got settled and managed to nap for an hour or so. Big day tomorrow!


Monday 10/6:

Tests, tests, and more tests.....Titus received the works on his first day of life...

1. X-Ray: One of the chest, as well as for placement lines in his umbilical cord. All good here.

2. ECHO: Now that he is here, it is much easier to see the anatomy of his heart in better detail. We actually had a bit of a scare on this as the Cardiologist on staff that day was confused and had accidentally looked at an older ECHO/notes when he chatted with us. Thankfully, within several hours they were able to clarify the situation and Titus's diagnosis remains the same; Double Outlet Right Ventricle, Remote Ventricular Septal Defect, Dextro-Transposed Great Arteries, Pulmonary Atresia, a right aortic arch and bilateral SVC.

3. EKG: To measure the electrical activity of his heart. All good here.

4. Ultrasound of abdomen and head: Just to make sure of no other surprises....

5. CT Scan: This was ordered after the ECHO was completed. It was requested in order for the surgeons to get a more detailed look at the anatomy of his pulmonary branches leading to the lungs. His PDA was too wiggly and convoluted to see behind on the ECHO and they don't want any surprise connections or disconnections to show up during his surgery...

It was a tiring and emotional day. However I was able to snuggle him for several hours and got to breastfeed a couple times which he was definitely interested in trying and actually became quite vigorous in doing!

Hardest things today:

-Seeing our seemingly normal and healthy son hooked up to lines just in case something goes wrong.
-Having to ask to hold him....again due to all the lines he is hooked up to.
-All the poking and prodding from several nurses and doctors. He just wants to sleep and eat!
-Getting accustomed to hospital time and procedures....

There were lots of tears and lots of prayers...

He is here!

This post is a couple days late but we have been BUSY!!!

Titus Emmanuel Presti was born on 10/5/2014 at 9:40pm. He weighed in at 9 lbs 10 oz and is 20.5 in long! We could not be happier with that and we hope he continues to beat the odds!

Labor: Started at 4:30 Sunday evening and progressed quickly. We left shortly after our doula arrived  and she accompanied us to the hospital around 7:00. I probably looked silly but to stay focused, I wore sunglasses to block out the bright lighting and my headphones which played my hypnobabies tracks that got me through my first delivery with Evan. I was clearly in active labor during admission (which was our goal) so we managed to skip around all the questions and pretty well go straight to L&D. Through Gods hands, the birth went as well as could be expected. Our plans were followed and we managed to have a completely natural and intervention free delivery...I didn't have so much as even an IV. Exactly what we were hoping for to give Titus the best start possible!

Birth: He was delivered and immediately assessed for a minute. Then we got about 5 minutes of skin to skin before they did another assessment and placed his prostaglandin and glucose lines. We then got about 8 more minutes of snuggles before Jake accompanied him to the NICU. 

I showered and my vitals were checked 4 times. All was well and I was discharged roughly 2.5 hours later to join them. Hallelujah!