Baby Bella Day 57 cont.

Not much to report today, BORING IS GREAT!!! Bella is up to 1595 grams, which is just over 3lb 8oz. She had two one hour sessions on the high flow nasal cannula and did well. There is a chance she may be on the high flow cannula full time by the end of this coming week. And I know she will LOVE that. She absolutely despises the CPAP, constantly pulling at it and hitting the piece connecting to her nose. The only thing that the nurses are slightly concerned about is the piece of bowel sticking out on her right side (the mucous fistula). It appears to have developed a red ring around it that could be a skin infection, something they would treat with an antibiotic in her feeds. Pediactric surgery has looked at it and is not too concerned with it at this time. They will look at it again in the morning.

We miss all of you and look forward to seeing everyone soon, God Bless!!!

Psalm 139:13-16
13 For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Baby Bella Day 57 - pics

Baby Bella Day 56

I cannot believe 8 glorious weeks have flown by so fast!!! I thank the Lord for each day He has blessed us with our child.

I got back into Charlottesville shortly after noon. After a quick trip to the apartment, Chris dropped me off in front of the hospital so I could run upstairs to see Isabella's precious face. There was only time for a quick peek at her because Cherish's service was at 2pm. It was a beautiful service and a great dedication for Cherish's short life along with the inspiration that her parents are. Just to give you an idea of how dedicated the NICU staff is, there were at least 10 of them there to show how much this little angel meant to them and impacted their lives.

Isabella had a very peaceful day again. There isn't much to report except one HUGE step. She got to do a one hour trial on the high flow nasal cannula. This is the apparatus that she will move to next from the CPAP. Bella's trial was great! She only had four desats at the beginning of the hour that were small and she pulled herself out of quickly. After that she was saturating in the high 90s. I also got to hold her while she did the trial. And this wasn't a skin-to-skin hold. I actually got to cradle her in my arms and see her adorable face at the same time. It was awesome to see her facial expressions! It appears that the little princess is going through a phase of wanting to be bundled. We noticed yesterday, even Pam last night observed, that she gets cranky, shoots her heart rate up, likes to be talked to and covered up tight. After that she is good as gold and falls back to sleep wrapped up in all her blankets. Bella put on more weight yesterday, up to 1580g which is 3lb 8oz.

In a rush to see Isabella, we forgot the camera :( SORRY! We will definitely have pictures to post this morning.

The following is a passage shared today at Cherish's service:

Psalm 121
A song of ascents.
1 I lift up my eyes to the hills—
where does my help come from?
2 My help comes from the LORD,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
5 The LORD watches over you—
the LORD is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
7 The LORD will keep you from all harm—
he will watch over your life;
8 the LORD will watch over your coming and going
both now and forevermore.

Peace be with you all...have a GLORIOUS weekend!

Baby Bella Day 55

I am sorry for not posting, but yesterday was a boring day for Bella, but I couldn't go see her. I was not feeling well and had a slight fever and flu like symptoms. Machel and I both called up to the hospital and spoke with nurses and they have lowered her CPAP pressure to 4! The little princess is breathing very well and remains around 23% O2 saturation. If she continues to do well they might take her off of CPAP and put her on a high flow nasal cannula. She continues to grow and eat very well. All the nurses say she is cute and a very easy baby. She really seems to be sticking to the 3 hour routine and really only cries or fusses when she is hungry, has a wet diaper or has something in her throat/mouth. She is very active and alert when she's awake and really likes to interact. But if she's asleep she does not want to be messed with!! It is so cute, if it is noisy she will put her hands over her ears, if it is too bright she will put them over her eyes and if she's really mad about something she will cry and kick her legs out.
She is up to 3lbs 7ozs and just continues to grow!! It's funny, we are tracking her growth and her length is only at 10% normal growth for a baby, but her weight is right at the 50% mark, hence why she is our little chunky monkey!! Well, I will add lots of pictures tonight and mommy is back in town today!!! Bella and I are very excited!! Thank you for all of the prayers!!

Baby Bella Day 54

Well some updates on the little monkey. Yesterday she had her first eye exam and they haven't said much, which the nurses say is a good thing, they normally don't say much unless there is something wrong. Today, they lowered her CPAP pressure to 5 from 6. She is still doing very well, between 21% and 25% O2 saturation. She is breathing really well and looks so cute!! Baby Bella opened her eyes and saw her daddy and her uncle Luke!! She was so sweet, she grabbed his hand and he was done!! She has her uncle Luke wrapped around her little finger too!! So mommy called in several times asking about her little girl, I know how much she misses her, she writes me for updates throughout the day. When Machel gets back Friday the first thing she wants to do is go hold her baby girl. Well, I am going to bed, thank you all for the love and support, may the Lord bless you with peace and happiness!!

Baby Bella Day 53

Sorry for the late post, I went up to visit her last night and did her care at midnight and then fell asleep.

Mommy woke up this morning and went to the hospital to hold Bella. She was sad, she had to get on an airplane and go back to Texas. This is the first time she's left Bella. But she got to hold little Bella this morning before she left! Bella was so excited and happy that she was sleepy the entire day. I was next to her from 1-630 this afternoon and she was a sleepy monkey!! I changed her and fed her and she barely moved, but when I touched her hand she squeezed and wouldn't let go. She is so cute and definitely has daddy wrapped around her finger. I couldn't let go, stood there for about 10 minutes until she let go. So when I went back up I got to administer her care. Machel and I are doing everything we can when we go up and visit her. We change her diapers, take her temp, change her clothes, clean her mouth and do whatever she needs. It is so much fun and really makes me feel like a dad! It is so difficult not being able to hold her, feed her, comfort her or be with her every moment she's awake, but being able to give her care and interact with her makes me so happy!!!

So it snowed here today here are some pictures from our apartment and some more pictures of the baby girl!!

Baby Bella Day 52

Bella had some A&Bs today, but they seem to be positional and blockage related. She is doing quite well breathing otherwise. Her Bilirubin level increased and they were concerned that she might have a kidney, gall bladder or liver issue. An ultrasound revealed that everything looks ok, although a GI specialist will examine her tomorrow. They think her bilirubin levels are up because she was on her TPN feeds for so long. Her body is still learning how to process, digest and excrete her feeds. They think that with some medicine, I can't remember what she's on, it should help with the Jaundis. Otherwise she is doing quite well, so here are some pictures of our baby girl, enjoy and God Bless!

Baby Bella Day 51

Isabella had a nice day! I got to hold her for almost two hours this afternoon. Bella zonked out on my chest in such a relaxed mode. Then Daddy and I did all of her care at 9pm. She was wide awake for the care and had a great time interacting with us. She did get a little over stimulated at the tail end and let us know by pitching a tiny bit of a fit. Right now Bella is doing well on her feeds, digesting the fortifier nicely. She is up to 1460g (3lb 3oz) and 39cm (13.75 in). They have her on L-carnatine for muscle tone, hordisol for jaundice, and caffeine to stimulate breathing. Looks like the normal preemie track from what we can tell; the apnea and bradycardia is slowly working itself out. Hopefully she will be able to push toward breathing on cannula some time next week.

Our Bella has been doing well, but today was a very difficult day in the NICU. You become very attached to other families, other babies in the NICU. You go through very similar difficulties, you talk to other parents, we are each others support through the difficult times and we share the joys in the good times. Unfortunately, Bella's neighbor for her first 6 weeks Cherish passed away today. It is so difficult to not see her when we pass by her old bed spot. Her parents were very kind hearted people who spent a lot of time at Cherish's side. We have prayed for her many times and tonight we prayed for the Lord to accept this little angel into Heaven and to comfort her family in their time of need. Shortly after Cherish passed away, another baby who was breifly our neighbor last week, also passed away after emergency surgery. Machel and I couldn't believe it. We have been here 7 weeks now and to be honest it is something that we try to block out and not think about. We try to focus on the positive and continue to look to the future, all of us parents in the NICU do that, it helps us cope with the situation. But now we are faced with the somber reality that the Lord sometimes calls these babies up to Heaven early and we have to trust in him. I ask that each of you pray for Baby Cherish and Baby Mohammed and their families. Remember to enjoy every moment of your life and tell your family and friends every chance you get that you love them. So thank you all for all of the prayers and love. We love you all very much.

Isaiah 26:19
But your dead will live;
their bodies will rise.
You who dwell in the dust,
wake up and shout for joy.
Your dew is like the dew of the morning;
the earth will give birth to her dead.

Baby Bella Day 50

Sorry for the delay in the update! We went to dinner with Ellie and Shawn (local preemie parents) and then went to tuck our precious angel in for a long nights sleep. Needless to say we got back to the apartment kind of late and tired. Thank you Ellie and Shawn for a great night and awesome company, we really enjoyed it!

Bella is doing well. She had a very peaceful day yesterday. There were a couple of apnea and bradycardia episodes, but she pulled herself out of them just fine. It is very important that these events become shorter, less frequent, and she is able to stimulate herself out of them without nurse intervention. This appears to be happening and is a great relief. The only other note to make is that they started giving her a medicine for jaundice. This is nothing to be alarmed with and is fairly common. All other things are progressing just fine at this point. She definitely has her times where she acts like a normal newborn baby and finding her little ways of letting everyone know what she wants.

Have a great day and we promise to write more tonight!!! God Bless!!!

Baby Bella Day 49

She was doing much better today!! They removed her PICC line today, she is eating like a big girl, she's breathing much better, she was more active when she was awake and she looks pinker and healthier! We are so excited and proud of her!! The Lord continues to fill our little angel with love and the fighting spirit. She is up to 3lbs 3ozs, she is looking longer and chunkier to us everyday! Machel was going to hold her tonight, but decided not to because of her A & B episodes yesterday. We want her to get stronger, but tomorrow night Machel plans to hold her and snuggle up with her.
She is so amazing!! We weighed her today and they briefly took her off of CPAP and she stayed in the high 90s for the entire 5 minutes!! Mom even took a bunch of pictures of her without her headgear on. I would've taken them, but I love to hold her and weigh her, it's the little things that are so fantastic in life!! We are so blessed and so thankful for every minute that we get to spend with her. I can't wait to bring her home and have her sleeping in her bassonnet by our bed. I want to wake up every morning with her by our side and go to sleep every night after I've tucked her in. I am so happy when I get to hold her, touch her or just watching her. There really is no other feeling like it and it is so amazing watching her grow right before our eyes! It has been 7 weeks already and she still wasn't due for another 9 weeks!! Well here is our beautiful baby girl, enjoy the pics!!

Baby Bella Day 48

Isabella had a very exhausting day. The apnea and bradycardia happened quite frequently this morning and into the afternoon. If more than three episodes happen in one day the staff begins to get concerned. Needless to say they are monitoring her very closely right now for these drops in heart rate and poor oxygen absorption. We noticed in her chart that she had not been on her tummy in two days. As we have observed, she breaths and rests better when lying on her stomach. Before we left this afternoon we made sure that Esther would put Bella on her tummy at the next care time. This evening we were pleased to find her on her tummy and appearing much more comfortable.

Other than that there really isn't much to report. We continue trust God and pray that she is able to remain strong.

I want to thank Jessica Brit for this lovely message on Facebook:
Psalm 125:2 "As the mountains surround Jerusalem, so the Lord surrounds his people both now and forever more." May the medical machines, tubes, and drips that surround you and Isabella be a constant reminder that the Lord is surrounding you now and forever!

Baby Bella Day 47

There isn't much new to report today. This morning we had a bit of a scare. Isabella has had increased stool output (more than they like to see), more episodes of apnea and bradycardia in succession, on a little higher oxygen setting, and her color was not as pink as it had been a couple of days ago. There was some suspicion that she may have an infection. They ran a chest and abdominal x-ray to see what the airways looked like. Dr. Zanelli read the x-ray and felt that it was okay but they will monitor her closely. Because of this incident they did not pull the PICC line today. In the event she did have an infection the antibiotics would be administered through the PICC line. It was decided that they would continue to monitor her ostomy output to determine if it is the increased calorie fortifier that is causing the increased stool output. At best they would just have to slow down her feeding a little bit. So as of now there is no infection and she is just kicked back relaxing. Her weight is up to 1420g or 3lb 2oz.

Isabella did get moved this afternoon. G pod was set up as a temporary area. All the babies around her in G pod were older and discharged so they had to move her with other babies for staffing purposes. The new area is definitely not as quiet but still somewhat private.

We hope that you all are doing well! Peace be with you & God Bless!

Baby Bella Day 46

What a great little girl!! She has yet to cry in front of daddy! Today she was quite calm most of the day. She is taking her feeds well, even with the fortifier, and is having nearly no residuals. She did lose a little weight but she has been peeing and pooping quite a bit lately. She is having one apnea or brady session each day, which is still scary, but since she is breathing so well(her O2 levels are around room air 21-22%) we are less concerned about these episodes. She had a very quiet and boring day, even the doctors said they are pleased with her progress and don't have much to say. She is getting her PIC line out tomorrow or Thursday and is on full feeds with fortifier. We are very excited about her progress and the "boring" days are nice! We need lots of those for the next month, then she has to have the follow up to the laparodomy. That will hopefully be the last major hurtle before she's discharged. Well I am going to bed, thank you all for your prayers and love!!

Here are some pictures of the baby girl!! And one of mommy making a face at me!

Baby Bella Day 45

Another peaceful day with Isabella! She did have a couple of episodes of apnea and bradycardia. Those are the scariest when you are holding her and can feel it happening. Some how it has gotten easier for me to watch, not as gut wrenching, and she seems to pull herself out of them more easily. The fentanyl was turned off today with minimal withdrawal from the little princess. Fortifier was also added to her milk this morning to bring it to 22 calorie feeding. The nurses said that it can be difficult for preemies to take the fortifier at first with residuals popping up before the next feeds. If this happens, the feedings are typically scaled back. When we visited tonight, Bella had done well with the fortifier thus far!!! I think she just wants to be more chunky! Once she takes the fortifier well, they will pull the PICC line, which they are thinking will be the day after tomorrow.

Isabella is definitely practicing her smile. She was so happy to hear Mommy and Daddy today and gave many smiles as we cooed over her. It is so adorable to see those little lips show the slightest expression of pleasure. I tried to hold her for a short amount of time today, but back to back days seems to be too much for her right now. We will have to go back to kangaroo every other day. I was still able to give her plenty of kisses on the head though!

You all are in our thoughts and prayers, God Bless!

Baby Bella Day 44

The baby girl is mesmerized by Daddy and oh so happy! She even smiled on command tonight, what a cool experience for Chris to have. I am so thankful he is back and able to see how far Bella has come in only a week.

And she really has come far in a week. It is such a miracle to look at her mannerisms to identify how much like a miniature baby she acts. Although she is doing much better than this past week, Bella is still having her moments of being a preemie. The episodes of apnea and bradycardia are still happening, along with the occasional traccacardia (spike in the heart rate). Along with these episodes she is desaturating on her oxygen absorption. The awesome news is that she is up to 25mL per feed at 8 feeds per day. That means that the PICC line that is somewhat invasive should come out in the next couple of days. It also means that her milk can be upgraded with fortifier to help her grow more efficiently. The state blood test that Virginia requires for newborns came back showing that she was weak in levels of L-Carnatine (helps with muscle activity); a supplement will be administered over the next month to boost this within her body. They have maintained her fentanyl from yesterday; most likely to wean completely tomorrow. Bella's weight is 1390g and length is 37cm. All in all she is doing well and having the typical preemie life...things that are expected!

At mass tonight, Father David gave a sermon on a story from the Bible that Chris and I have read Bella many times over. It is the story of Samuel from the Old Testament when God speaks to him in the night and Samuel believes it to be Eli. Samuel finally realizes, with Eli's help, that it is God calling to him. Father David pointed out that we so often turn to God in prayer and talk to God ourselves. But how often do we listen to God? How often do we look to Him and how He talks back to us? Remember, even faith and our spiritual lives are a two-way street. Peace be with you & God Bless!

Baby Bella day 43

The Lord has truly blessed us!! Our little angel is doing so well. We spent nearly the entire day and night at her side. She is so cute, I am so thankful for all of the time that I get to spend with my girls!! Well, she is up over 3lbs, eating very well, breathing very well and looking so cute!! She still hasn't thrown a fit or cried in front of daddy, but I am sure that will come often. We got to do lots of things with her today!! She got a bath, we took her temperature, changed her and her bed, weighed her, held her hand and loved on her!! Here are more pictures of the family!

I am amazed by how much she has grown in just 5 days!! Thank you all for the prayers, love and support!!

Baby Bella Day 43

Picture Fun!!!

Baby Bella Day 42

Daddy got to come and see his girls!!!!!!!! I got in at 10pm tonight and was greeted with surprises!! Bella has been moved to G pod. She is one of the most stable newborns and even though she is not quite ready for transition there was an emergency. Triplet preemies and 2 more little ones were all delivered today, so they moved our constantly growing girl out of the most intensive area. She is breathing really well, it looks like the up and down breathing episodes are behind her. She is growing into the equipment better allowing her to breathe better. (I am so sorry that Machel had to go through last week without me, thank you Lord for giving her the strength) It was so amazing just sitting there watching her and touching her again!!! I missed her so much!!! Well Machel and I hung out with Colleen and Bella for an hour and a half and then came to the apartment. But before we left we got to pray together as a family again, it felt so serene and wonderful to be there with my family thanking the Lord for all that has been given to us!!

Thank you all for all of the well wishes and prayers, may God bless you and your family!

Baby Bella Day 41 cont

First and foremost, I want to send out a few thank yous. To the Spang Family, the package of preemie clothes you passed down are so adorable! That was an awesome item to open during a somewhat rough week. We will be sure to return them once Isabella out grows them. Then to Amy, Lauren and Ellie for keeping me company this week. It was great to spend time with each of you, especially while Chris was gone...it helped keep my sanity in check. Once again, without people like you in our lives, this journey would be much more difficult.

Now, as for Bella, she is peaceful tonight. I held her for a little over an hour this evening and she was absolutely content. She did have a heart rate dip while in my arms but it was related to her head positioning and one of the nasal prongs coming out of her itty-bitty nose. The only real adjustments they made today was stopping her IV foods (the TPN), reducing her fentanyl by the 10% per day, and changing the theophylline to an oral dosage that should concentrate throughout her body at a slower rate. Her food consumption is around 90mL per day and inching ever closer to that 3lb mark. I am hoping that when Daddy sees her tomorrow night she will be over the 3lb hump.

Romans 12:9-13
9Love must be sincere. Hate what is evil; cling to what is good. 10Be devoted to one another in brotherly love. Honor one another above yourselves. 11Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. 12Be joyful in hope, patient in affliction, faithful in prayer. 13Share with God's people who are in need. Practice hospitality.

Dear Heavenly Father, we thank you for this glorious day, for our precious baby girl and the gift of life, for our amazing friends and family, and for kind hearts. Please continue to uplift Isabella and fill her with the Holy Spirit. We pray for all the other families out there that are suffering and need your guiding hand. We hope that they are led to you in the midst of their trials and will do what we can to point them in your direction. We ask these things in your precious sons name, Amen!

Baby Bella Day 41

More pictures!!! Isabella is having a good day. The As and Bs (apnea and bradycardia) happened once yesterday and once so far today. But this is said to be normal in these early weeks of learning to breath. Now that the tube is out of her mouth (and Daddy is not in the room) the little princess has thrown a couple of fits. She actually has quite a voice for being so tiny. She is very active and likes to throw her extremities around. Oh what a handfull she is going to be!!!

Baby Bella Day 40

Thank goodness today has been better!!! I called last nights nurse about 6am just to make sure that Isabella had a good night. She informed me that her oxygen ranged between 42-46% throughout the night, the CBC from yesterday morning came back normal, and her blood gases were also good. I was so relieved!

I got to the hospital as early as I could and found the angel doing even better than reported to me this morning. Bella was at 35% and hisating...she also had prongs in her nose...all of a sudden they fit! Ellen was standing by and told me that was making a huge difference with her. By the time I left her to run errands, she was down to 25% and doing splendidly.

Rounds came late this afternoon; luckily I was still in the unit. Ellen highlighted that they did switch her from the biphasic CPAP to nasal CPAP and she is doing much better. Bella's x-ray this morning was improved. Ellen pointed out that her lung sounds are great and that she felt like the biphasic was causing too much obstruction. Bella has also responded well to the theophyllin they started yesterday. She has not had any apnea in a day and a half, but continues to have bradycardia episodes. I asked why that is. Dr. K said that she doesn't like her NG (feeding tube), she has pulled it out twice since yesterday, and this can cause a vagel response that leads to a decreased heart rate. He also mentioned that 2-3 of these episodes a day is normal for a preemie. I just wanted to stress that it was happening to make them aware...I don't think that the nurses have been emphasizing the bradycardia. And even though the little monkey has been eating like crazy, up to 13mL a feed, her labs show that her chloride was low, which means they will most likely need to start putting an additive with my milk. I asked if there was something I could eat to help, unfortunately there isn't.

Here are pictures for Daddy!!!

Me covering my ears from all the noises!










Me chewing on my fingers...I was trying to suck my thumb!

Baby Bella Day 39 cont.

Goodness I do not like leaving our little girl! I wish I could just get a perfect, big, comfy chair to prop myself right next to her bed, hold her hand and position her pacifier in her mouth all day and night. (But all the beeps and alarms would surely drive me crazy...wait...they already have.) Anyhoo, on a good note, Isabella had her eyes very wide open tonight, gave me a slight smile and just mellowed out as Mommy held her paci in her mouth for close to an hour in total.

Unfortunately Bella is still on (what we consider) high oxygen requirements. I know some of you are probably saying...phewy, 48% oxygen, that's nothin'! But for a girl who spent most of her time on high 20 settings on the ventilator, it is hard for Mommy and Daddy to see. Her x-ray from this morning was hazy and wet, so they gave her a dose of lasix to help remove the fluid (she had a very large urine output this evening). When I arrived to her bedside, after waiting in the lobby for 30 minutes for a fire drill, her oxygen % was up to 86 and she was desating...I about freaked!!! The RT Stacey introduced herself and immediately tended to Bella. She discovered that Bella's mask was not sealed properly and collapsing her left nostril not letting any air get in that passage. Instantly her sats shot up and oxygen % lowered to 50. What I have observed over the last two days is that the head gear and mask are extremely irritating to her. Bella constantly swings at them and ocassionally pushes the mask. In addition, the head gear is a little too big for her head and has a tiny amount of slack at the top. The down side is that the size down in the head gear squishes her head. Yet another downside is that her cute little nose is so small that she can only wear the mask and not the prongs that they are supposed to rotate with to minimize nose and skin damage. After seeing her oxygen so high and not seeing any changes from earlier in the day, I asked to talk with the nurse practitioner Helena. Here is what I found out:

They did another x-ray while I was pumping. The x-ray was also wet and hazy, so they plan to give her more lasix tonight to help with that. There is a type of argyle prong they are going to attempt to use that would get the mask off her face. They plan to use lung recruitment (the bag) during her cares where they have to take the CPAP off. She had a CBC run this morning in labs; they are going to check that one at the 12 hour mark and draw another. This is RSV and Flu season so they don't want to completely rule the possibility of either of these out. Bella's blood gases have not been very good the last two days. This test lets them know if she is getting the right amount of oxygen on a consistent basis into her system. If these continue to be weak, they would most likely put her back on the ventilator. Cherish did not have a good day, so they were tending to her most of the time I was there and didn't get the blood gas drawn while I was around. If the blood gas comes back decent, they are most likely going to try her on regular CPAP instead of the biphasic. Now the regular CPAP doesn't give the extra pressure/breaths that the biphasic does, but it does compensate for any air loss due to a loose mask. They would only test the regular CPAP machine for an hour or so to see if it is even beneficial for Bella. So if you cannot tell from my rambling, everything with her breathing right now is kind of trial and error. And as Helena said, they will not underreact in any way so they are monitoring her closely. The instant she starts to show strong signs of deterioration again, they will re-intubate her and probably keep her on the ventilator for another week.

I want to share a couple of scriptures that have been passed to us:
Psalm 46:11"Be Still And Know That I am God."
Ephesians 3:20 "The will of God will never take you where the Grace of God will not protect you."

Always trust in Him, for He will guide the way!

And without fail...PICTURES!!!